I fight for almost all of what Grace needs to be kept alive. Who do I fight? Her insurance company. They have one set of things that they think will keep her alive, but frankly, it would be just barely alive. I have another set of things that will allow her to choose to live a full, rich, long life. I choose option B, my set of things. Door #2, please.

Imagine a world in which is D Mamas and Papas didn't have to fight so hard to get what our Type 1 kids need. I would have:
- more time on my hands
- more energy to do things I like to do
- more energy makes me happier
- happier me means happier kids
- more money and less out of pocket costs

I like that list. A lot. It's not something I have though. I spend hours, which eventually add up to days, on the phone with insurance companies. Getting pre-authorizations. Fighting paperwork mix-ups. Arguing over co-pays I should not be paying. Getting new transmitters and receivers. Calling about Pods that have screeched and squealed and occluded. OMG the phone and the emails. Oh and the paper, there's lots and lots and lots of paper.

The latest is calling insurance companies to ask for one more vial a month of Novolog, pretty please. I have a growing girl in the throws of puberty and we are maxing out our two vials month. Grace's endo has written the script calling for three vials a month. The insurance company says two is all they will give her. Period. Every single month I have to get a pre-authorization for another stinking vial of the liquid gold. EVERY. SINGLE. MONTH. It gets old, real fast.

I would love to somehow advocate and press for changes to how we care for Type 1 kids in the medical system. The way it is now, it's random from company to company and from state to state. God help the person who has their child on Medicaid (that would be us!) Some cover CGMs, some do not. Some cover all pumps, some cover specific ones. Some people never have to fight about how much insulin, or test strips, they get per month. This is just ridiculous that we are accepting this.

Standards of care for children with Type 1 diabetes has radically changed within the last ten years and the insurance companies need to radically change the way they cover children and their supplies.

It's simple. What does that child with diabetes need to live a full, productive and rich life? Give us that. Sign me up.

2 comments:

I feel you on this. I was the diabetic child in this situation, and I know my mom went through hell to get me some of the things I have. I know it stressed her out, and it continues to stress her out even though I'm 24 and handle most everything on my own. Thanks for posting; it gives me a greater appreciation for everything my mom has done for me.

how you climb up the mountain is just as important as how you get down the mountain. and, so it is with life, which for many of us becomes one big gigantic test followed by one big gigantic lesson. in the end, it all comes down to one word. grace. it’s how you accept winning and losing, good luck and bad luck, the darkness and the light.